I started Elavil (it's an old anti-depressant, and my Dr. said it is good for 'older people to help them sleep') 6 years ago. I tried to get off Elavil (yes I take pred and have for 4 years) several months ago, and I was sleepless for many nights. My rheum. convinced me to take them again, and I did. I have lots of anxiety (mostly fears based on stuff that never happens). Please don't blame yourself or feel weak for being anxious and down. PMR is not easy! Is the reason you don't want to take the anti-depressant because it makes you gain weight? I sympathize--Elavil makes me crave sweets and of course pred. is asssociated with weight gain. And yes, these meds did make me gain weight. I have tried to stop the pred. after all this time, but I can hardly move when I do. I think sometimes we need all the help we can get--PMR is not an easy thing to have, but life is still good, huh, even with a little black cloud over your head?
Sorry you are feeling bad. Myself, I was never on 15 mg more than 2 or 3 weeks. If your PMR symptoms have been relieved at that dosage, you might feel better if you reduce your dosage a little. Try at 12.5 for a week or so, and if that keeps you symptom free, try 10 mg. I felt "buzzed" at 15 mg. (also, see my earlier messages regarding the chromium picolinate) but felt more normal at 10 mg. Doctors try to make it simple with the dosages, and I can't blame them. Most of us have learned to adjust our own dosages depending on how we feel. As long as you know how important it is to taper your dose, especially after you've been on prednisone for a few months - quitting cold turkey when your adrenals aren't working properly can result in a life-threatening "adrenal crisis".
Just got back from the Dr (GP) today and they said the blood sugar was high and could be where some of the symptoms come from..I will DEFINATELY try the chormium picolinate.
thanks also abaout the advice on the dosage..yep, dr was not adjusting me until next month...so i have another month of this..the high blood sugar and "now you must eat a diabetic diet and test your blood 3xs a day to make sure the sugars are ok and excersize every day" was really a POW in the face today...and i sooo crave sugar (got really good at making cupcakes this month!)
re the antidepressents..dr is going to try me on them again..low dose and yes..i am terrified of getting yet bigger...
who knows maybe with all this excersize and no sugar ( and no cupcakes
thanks again all of you for being there..for SOMEONE to talk to..since i know NO ONE that even begins to understand this..
the hubby said to me today..just forget the predinsone if it is causing you all that trouble..you will be fine..
What ?do they not listen to us at all??? (and that was AFTER i gave him all the articles about this disease and he went to the rhumy with me)?? ahhh where would i be without reading about all of YOU!!
Hi Cathi,
You are welcome! Yeah, I started out at 20mg. of pred. and it was pretty bad. I was so happy when I began reducing the dose, even if it meant my PMR was more evident. I am sorry about your high blood sugar. I also love sugar and am known in my town as the cookie lady--I give lots away but of course I have to test them. Oh, I am going to begin taking chromium as well. Let me know how it works for you.
I think it's a good idea to go back on the anitdepressant--I know I am glad I went back on mine. And yes, I gain weight when I take mine as well, but right not it's worth it for me to get sleep.And yes, it is great to have you and everyone on this form to listen to and talk with. I feel as if I have been in the PMR closet and have 'come out' after all these years. I suppose it is confusing to others because PMR is not clearly understood. When your family or others aren't sympathetic, just pay a visit to your new friends on this forum. I have written so often--I discovered this just last week. After 4 silent years I just can't quit writing. I am glad you found this right away. Hang in there Cathi!
Wildflower
Hi Cathi, I am so glad you found this site. PMR can be depressing. I was diagnosed last April with PMR and put on 10mg of pred. By Oct I had to do something, I was sweating all the time and gained weight. The Dr put me on Cymbalta which has helped me a lot. I also started a no sugar diet and anti inflamatory diet. By the end of Oct I was off the pred and losing weight. I still am no sugar and really watch what I eat for fear the PMR will come back. My SED rate and C-pro are still not normal, but droped quite a lot. I still have stiffness, but not like I did. I knew within 3 days of no sugar, I had to give it up. There are lots of treats you can have made with splenda, when you need a little something. Good luck, GeriHi Geri, thanks so much for this info! Many of you have agreed that sugar is poison, so I am making the decision to put no sugar into my body. It's going to be tough, but so is PMR. I love your success story!
Hi wildflower, I used to love sugar, but when the PMR got so bad and the pred made me crazy and sweaty, giving up sugar was not so bad. Really, there are lots of good stuff made with splenda. I hope this helps you as much as it has helped me. GeriA little different take - although I have had some side effects from the pred, (bloating, fat face, full bladder). However, I felt the best I have felt since coming down with PMR from 20 down to 12.5 mg
Now I feel a little worse with each reduction, despite going slowly. The worst is the return of the depression . I was wondering before if the depression was actually the PMR or due to the long term extreme pain. Now I know it is the pmr - I am not in much pain, but the depression is really creeping back in. I am very weepy, etc. It feels like before I was on the pred... all the symptoms except the extremem pain.
So the love hate relationship with pred continues!Oh, BTW - Acupuncture definitely decreases the pain and detoxes the sugar cravings. It has really saved me through this process.thank you sooo much for all your help!!
today i had mostly no sugar..
blood tests showed big sugar increase from pred..ah well
i know this is all for the best..low impact excersizing, no sugar, plenty of rest..
but those emotional ups and downs are really rough!
thanks again all you GREAT pmr people...
cathi
Good morning to all, Cathi, good for you that you cut back on sugar. I confess that I did not do as well. I must throw out all chocolate, etc. that I have for my grandchildren . I look forward to hear how you're doing--you can by my inspiration! I have these good intentions, and then find myself eating mindlessly. All is well when I have sugar in my mouth, folllowed by regret.
pgr555, I am sorry you are weepy. I don't know what is worse, the pain or the depression.
It sure has helped me to talk and listen to you all of you! I hope in some way you can gain some measure of comfort fromt his forum.
Blessings, wildflower
i have been on pred for two years. i have finally gotten down to 8 mg.
was away for one night and forgot my pills, so i could not take my normal dose of 8 mg.
about 7 or 8 hours after i should have taken the dose of pred i was extremely weak, could just about stand, got sweaty and had to lie down, shoulders, neck, hips and legs ached to beat the band, felt so terrible i could not understand what was happening to me , almost went to the emergency room
my question, do any of you think it was from the missed dose?
thanks................georgiana
Hello and welcome to all the newbies but sorry we have to meet this way. I have not been feeling well so have just been lurking and not posting. This is a great forum to get all your questions answered or just vent if you want to.
I just returned from my Drs. appt. and I asked her about the depression we all seem to suffer from and she said it is caused from the pred. (I think it is maybe both PMR & pred.) I had a real bad bout of depression back in Dec. and one of the girls put me onto something from the health food store and it seems to work pretty well. Dr. seemed ok with it too. It is called 5-HTP or 5-Hydroxytryptophan. I just started taking it again as the depression was creeping back and I am feeling pretty good. A word of warning to all....do not try tapering off pred too fast. I got in a big hurry and now because of that I have to go to physio to try and get my right arm and my legs to work properly and I have to stay at 7.5 until Dr. says it is ok to decrease again. Up until now I have been in charge of when and how to decrease the dosage so lost that priviledge. How stupid can you get.
pgr....it was great to hear that you had tried acupunture and had some relief from it as I was wondering if it would be worth a try. After phsio I think I will give it a go.
Glad to see the board so busy again and hope everyone here is doing well.
TeedOff2008-04-02 16:11:00Hi Georgiana, I missed a dose a few days ago, and I could tell half-way through the day. I had lots of pain and difficulty standing from a chair, stairs, etc. I believe my skipped dose was the cause of this immediate pain. When I got PMR, it happened overnight, so I guess the symptoms can come back so quickly too. I have had PMR 4 years (I am 59), and so I have tried to decrease dose of pred.--I know I am not taking enough (2mg), but I am fearful of taking more after all this time.
TeedOFF, thanks for the advice! From reading this forum, it looks as if many of us 'play' with our prescribed dose. I hope you feel better soon!
wildflower
Georgiana -
Yes, I certainly think that was from the missed dose. Your adrenal glands are not working because they expect the prednisone to do their daily job - quitting prednisone suddenly can be very dangerous (life threatening) if you've been on it for more than a few months. You have to taper off slowly to get your adrenal glands back to work.
Wildflower and Ruth.
thanks for your reply, i will not do that again, as much as i want to get off the pred i will go slowly.
Some one mentioned the full bladder feeling, i have that very often, like a pressure down there, have been tested numerous times for uti but always neg. i am so glad that was mentioned, i did not think it had anything to do with pmr, but perhaps it does, and it helps to put your mind at ease about all these symptoms.
thank you all Georgiana
Georgianna, I actually started this thread with the question about full bladder. My acupuncturist is the one who told me it was the pred.
Pat, I went to the dr this week and she also said the depression is pred related... that decreasing and having the adrenals not working yet is the cause. I really question this - because when my pmr was worst BEFORE pred - I was really depressed - I think depression is a symptom of the condition. I know it is listed in all the descriptions on-line, but before I always wondered if it was just the pain causing it. Now I think NOT!
ok dead tired - later all
Question?
When I got PMR i got it mostly in my arms..they were sooo stiff...now of course with the pred they are not stiff anymore..
but lately they have just been tired...not in pain..just tired arms...sounds wierd..i still have strength and all..just that i am AWARE of them..do you think that is just pmr..still the effects?
had it now for almost 2 months..so many new sensations..
another question...?
do any of you just get a bit more nervous?
right before i was diagnosed with pmr..i got really nervous..(now i am actually quite a strong person) but it was like when you get anxious but it just didnt go away for a few days..nothing really started it..then it was only a week or so later that i woke up stiff and full of pain..
anyhow..since taking pred..i still notice sometimes this anxious nervous thing...think it is the adrenals?
so wierd...
what has happened to the old me???
thanks for listening!!
cathi
Cathi,
I have had much more anxiety lately. I think it is the decreasing pred. My overall thoughts at this point are that we don't know what is pred, what is pmr and what is lack of adrenals... Bottom line is it is all connected and just @#><(!
Dr and hubby both keep telling me I am approaching 2 years and it will be over soon... I am an optomistic person, but this idea that pmr ends by the end of 2 years is such a joke after being with all of you... I mean seriously - suddenly, I will be better in 2 months! Yipeeeeeeeeeeee!!! Can't wait pgr555,
Wow, my sentiments exactly--I have always been anxious but I think it has esculated since I was diagnosed with PMR. I am down to only 1mg of Pred., but I think it along with everything else affects my well being.
I am sorry to tell you that I was diagnosed with PMR 4 years ago (age 55)--I try not taking Pred. and I can't get up the stairs, get out of a car, put a sweatshirt on, etc. I probably should be taking a larger dose becasue I still don't get around great. I AM waiting for PMR to go away, but it is not cooperating
It really helps me to hear from all of you--I don't even tell anyone I have PMR--I just say things like "granny ain't gettin' around too good today", and then I laugh. I try to stay on the positive side, but I love knowing there is at least one place where I can b#%$@.
thanks everyone!
wildflower
Cathi,
I've been wondering the same thing. How am I suppose to feel? Yeh I can move now but..... I DON'T feel good. I don't feel like I'm all here?! Everyone says, ohhhh you're better NOW. What, because I can bathe and dress myself now at 55 years old??? I'm NOT BETTER. I'm not out walking like I use to everyday. I'm afraid to go walk alone. It annoys me that people can tell me how I feel when they don't know. I fell twice today for no reason. Well, at 5 :30 this am after 3 days of no sleep and taking sleeping pills every night, I guess I fell from exhaustion. Then later this afternoon, I bent over and got dizzy and did flip and a roll and went down. What the heck!! I would love to have seen a video of that move! I don't know what to expect next and I was never given any information from my rheumy.
I noticed you posted this in March so I hope things are getting better for you.
Cathy
Hi cathy
(great name!)
i think you hit on one of the hardest parts of this whole thing..that no one really gets it..I have heard so many times..Oh you have fibromyalgia..and i go NO NO..it is autoimmune it is polymyalgia..
i have had books given to me on fibromyalgia all from the most well meaning people..that i want to clunk in the head. jk! and have had all well meaning people wonder why i am achy or unable to do things..
now my mother is 91 and we just put her in an asisited living center..where i am taking care of her alot and really sometimes i just want someone to take care of me..
but...all of you guys know all of this..it is just wonderful to be able to talk to people who know..
i am now down to 10 mgs and it is a bit more painful..and my back is killing me..)never had a back pain in my life til now..
and 4 am is one of my common sleep times..
but ...with all of that complaining..
i am grateful for all of you!!
cathi
Hi Cathi, Cathy, and everyone else on here. I started with PMR back in January of this year. Like many of you I don't know how we are supposed to feel or if I even have the right diagnosis. I did another post asking about how some of you presented with this. I wasn't typical. I never really felt pain in my arms, thighs, neck or in those joints. When this all started I started retaining 10 pounds of fluid within a few days. I couldn't squat because of fluid in my knees. I had swelling in my hands and my ankles were very swollen. I felt stiffness and pain in those joints but my muscles seemed ok. The only thing I remember and still experience is what feels like a pinched nerve between my left shoulder and neck area - and that is only when I do dishes. Anyway, my gp tried me on a strong diuretic which didn't do anything for the fluid retention. It was after my rheumatologist put me on prednisone that the 10 pounds of fluid went away within a week. I am still on prednisone now. I originally started out at 20 mg and jut reduced last night down to 8 mg. About that bladder issue mentioned in earlier posts - When I was 12.5 mg and higher I had to urinate every 1 - 2 hours all night long. I was fine during the day. Once I got below 12.5 mg the frequent night time urination went away. Once I got down to 9 mg my need to eat so much has decreased. I do try to make sure I don't eat too much sugar because that just makes me so hungry. Cathi - I understand what you are talking about with having to take care of your mom when all you want is someone to take care of you for a change. I have two kids (teenagers now) and a mom that lives in a nursing home now. I have gone through alot with my mom for the past 3 years. I just took her to a doctor's appointment today. I know some days can be really hard, but I do believe it will get better someday. I am thankful for this forum and the wonderful people that participate here so people like me don't feel so alone. You guys are right that no one seems to understand this unless they have it. Best wishes to all for a speedy recovery!
mom2
Both Cathi's =
Hope you are feeling better. You might want to search the archives for the thread on "spoon theory" and telling people about how you feel...
Good morning,
I'm waiting for a call back from my Rheumatologist with the results of my temporal ultrasound. So I figured I would vent a little while I wait.
While I was on vacation, recently, I lowered my prednisone, twice. Baddd, Cathy! I was on 20 mg in the am and 20 in the pm so I changed to 20 pm and 15 in the am for about 10 days. Then I decide to try again. I went to 20 in the morning and 10 mg at night. The symptoms started coming back so when I saw my primary doctor, he told me to raise it back to 20 and 15. It just seems like a lot to me! I know I shouldn't be messing with this stuff on my own but I was tired of not sleeping and everything else,... Even when I take something for sleep, I usually don't sleep much. I thought why not just handle a little pain and cut down on the prednisone and maybe have less side effects??? It made sense to me at the time!!!
We'll see what the rheumatogist says about my results but I wonder how reliable that ultrasound will be with all the prednisone I've been on. I wonder if he still will want to do the biopsy
It bothers me when people say how good I look. I look healthy without the pain now and I haven't gained weight from the prednisone, YET....just a little in my face. Every one keeps telling me that I'M BETTER! I want to say crawl into my body and stay there for awhile and give me a break from all this since I look so good.
Cathy Hi Cathy, can't answer your question on ultrasound and biopsy as thats one thing I have not had to deal with, thankfully. When we are sleep deprived we will do almost anything and it all makes sense at the time. Makes sense to me now that you dropped at night maybe you might try alternate nights next time???
Can really relate to ' you look so well ' . sure...underlying pain, sweating, brain fog, fat face, bloated throat, jelly belly ect!!!! or if you say still on pred....." still, thought you were over that years ago!!!" We all wish that were true and if like me only go out and about when having a , good day. Yep we all know and thank goodness we can vent here and be understood. Has anyone come up with a good response to share with us?
Hi Cathy,
In June 2005, I had a biopsy and then I thought it was to be able to tell that I had pmr but afterwards, I have understood that it was to establish if I had GCA or not - and I had GCA. I have later had ultrasound but that was for heart and lungs. I think you mena for pmr.
I am just down to 0.6 mg (1/4 of 2.5 mg tablet) after three years. I started on 20 mg and then I took a "falling asleep pill" - only needed half a tablet. For a long time I don´t need anything to fall asleep.
I think you shouldn´t blame the pred for your troubles. Without pred you would feel even more miserable. Thanks to pred I have felt rather well most of the time. After having gone through the tapering process, I hopefully will leave pred later this summer. I don´t have any pain but I feel rather tired, especially when walking uphill or if I do a physical exercise. I am male and will be 71 next month. In earlier posts, I have described how I gradually go over to next lower dose of pred.
Several persons prefer a special diet. We eat salmon one day a week and chicken one day a week, lots of fruit and vegetables. Otherwise I dion´t have any diet. And ---I drink wine to the food several days a week without any problems. I therefore think it is individual.
Good luck
Ragnar
Cathy
If you have GCA, please do not mess around with your prednisolone.
GCA if not kept in control with prednisolone, can cause you impaired vision or to go completely blind, and its irreversible.
PMR does not have that capability.
I have GCA (not pmr) and after steadily dropping from 60mg per day to 6mg, I had a relapse (after 15 months) and was back on 60mg per day. Now steadily dropping again and hoping for no relapse this time. But as cause and cure are unknown - who knows what the future will bring. But not blindness if I can avoid it.
Yes, I suffer back pain, water retention and all the other side effects. But the alternative, impaired or no vision is not just an option. But the moon face went away, the peach fuzz also, and the water retention was beginning to get under control and the other side effects were lessening.
But if the symptons re-occur - back to 40mg - 60mg. I am determined I will keep my eyesight.
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